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Your Voices: Abby's CdLS Foundation Story

20151023_133233.jpgLike many parents of a child with special needs, we felt overwhelmed with the news of Abby's CdLS diagnosis. What did this mean for her health? Her development? Her future? These were just a few of many questions that flooded over us. 


The CdLS Foundation became a comforting resource for us as we sought answers to these and other questions. Abby had just turned four when we first contacted the Foundation and learned that the biennial conference was being held that summer in our hometown of Chicago. It was a perfect opportunity for us to learn more about the syndrome, meet with doctors and other professionals well versed in CdLS, hear about advancements in treatment, and meet other families.

Since that day, the Foundation has remained a source of tremendous support for us. We've gotten to know many of the staff members, and have connected with additional families through assistance from the Foundation. Two years ago we traveled to the Children's Hospital of Philadelphia (CHOP) to attend their CdLS Clinic, a resource that we first learned about from the Foundation. Doctors at CHOP work closely with the Foundation, and in many ways are an extension of the Foundation family.

Navigating the waters of a CdLS diagnosis has been made easier with the help of the CdLS Foundation. It's reassuring to know that they are as committed to Abby's health, well being, development and watching her thrive as our family. The Foundation is, and will continue to be, an outstanding resource for us.
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